The day before Christmas I had a ProMedica envelope in the mail….and I thought, the news can’t be too bad. Dr. E wouldn’t mail really bad news, and in fact it wasn’t. On November 27th I had a big battery of blood tests, and almost a month later have finally received the results. The news was all basically good, but the one I’d been waiting for was:

“No sign of hypercoaguability inherent in your blood chemistry. OK to stay off the blood thinners”

Whew….this is good. At least I think I’m not going to keel over under the Christmas tree of a blood clot this year, and maybe not ever if I stay away from long surgeries and long periods of inactivity. That threat of blood clots though…it is a sneaky insidious thing. You can be nice and relaxed one moment and then the next, you freak out, “Have I been moving enough? Am I moving too much? Are my ankles swollen?” And then when my left ankle, the site of the last blood clot does get swollen, I wonder….is that it? Is there a clot down there right now blocking flow? Can this kill me? What should I do? And because I can’t keep calling a doc with every little thing, I just run for the bottle of baby aspirin and chew up a little tart orange blood thinning agent (having no idea if I am doing the right thing or not.)

Lump-Bump update

So. For those of you who really care, here is a brief history of my big hard lump/bump on my left breast, site of first cancer, and the resolution (for now).

10/6/2010 Felt a hard round lump (imagine a medium sized marble under your skin) about the same spot as the original tumor…..but how? why? Ostensibly, there is no breast tissue there, and no fat positioned there from the tram-flap surgery. The only person I could see quickly was Nurse S (from B2) who thought it was my rib. Hmmnnn. I tried to believe her, but just couldn’t. Too round, too “sticking out” from the long curved shape of my rib…I think……..so began a ten week trip into medical test land.

10/19/2010 Dr. S – concerned, ordered the first ultrasound, results inconclusive, but probably not a tumor

11/11/2010 Dr. E – felt results of CT not definitive. Could be fat necrosis, but not willing to gamble on that. Suggested PET scan or biopsy. Picked the PET scan card. (On the positive side, he recommends coming off the blood thinner, Coumadin!)

11/16/2010 Met the nice folks at the POSITRON EMISSION TOMOGRAPHY department at Flower Hospital, where they inject a radioactive cocktail into your vein (ewww) then you have to sit real still. Easy test, but gives rise to creepy thoughts.

11/21/2010 Dr. R – felt it was ‘stupid” to get a PET scan. Too expensive and results inconclusive. No idea if tumor or fat necrosis. Recommend a trip to Dr. B1 and biopsy.

12/1/2010 Dr B2 – felt no biopsy needed. Only fat necrosis. Plan the second reconstruction surgery in late January and then we’ll cut it out, whatever it is and send for testing.

12/6/2010 Dr. B1 – long time with ultrasound wand in hand, positive the growing lump is a “rib”. Recommends not having it “cut out”. Brings up new concern re/ blood clots, thinks going off Coumadin is risky, and recommends I see Hematologist-Onco ASAP.

12/16/2010 Dr. S – Not concerned about discontinuing blood thinners…felt four months followed standard protocol, and clot was the result of surgery, and probably not inherent in my chemistry. On the lump, probably a good idea to move ahead with the second reconstruction surgery, and Dr. B2 will clearly know what to do regardless of what the lump is. Still thinks it is probably not a tumor, and probably not a rib.

So there. I’ve asked every doc along the way, “am I overreacting??” and they have this standard line about “Well, once you’ve had cancer, you have a hyper sensitivity to anything out of the ordinary in your body and your anxiety level…….blah, blah, blah………”

So there it is. I have had to force myself to stop feeling the lump/bump a hundred times a day. So much mental wrangling, this dealing with the aftermath of cancer….it is exhausting. I’m cautiously accepting that it is probably not a tumor. It is real hard for me to accept optimism, and that make me sad. I used to live life completely, unabashedly optimistic, believing the universe held only great things for me, and I want to find that girl again, but she is being elusive. I don’t have to look far to see how lucky I am to be alive, as stronger women than I…. have not made it through this trip.

In the meanwhile, I’m planning for the next step, the removal of the expander implant and placement of the “permanent” implant. January 27, 2010. More on that later.

I’ve been remiss in not updating my progress here. Sorry. Fulltime work, going to PT and medical appointments along with motherhood and life in general…keeps me busy.

PET Scan – Radiation Oncologist said, “stupid test, too expensive, inconclusive..” Also said he’d make the appointment for me to see Dr. Butler….the queen of all docs, the “Surgeon” and I say that with a mix of both fear and respect. Butler has more experience than anyone else in town with breast cancer and has seen plenty of fat necrosis, tumors, and all things foreign in breast tissue.

My appointment with Butler was this past monday, and her opinion on the lump, after a considerable amount of time wielding the ultrasound wand was…………the lump is “rib”. The lump will not have a needle stuck in it. Too close to the heart and the lungs, and risk of puncturing a lung or worse is too great. Great…good news, right? Wish I could get my mind to believe that. In my heart I don’t believe it, but I guess I have to believe it. I’ve had Medical Onco, Plastics Guy, Radiation Onco, and now the Surgeon all say, “nah….probably not tumor.”

My Supreme Surgeon did, however, express great concern with the decision of GP to take me off of blood thinners after only three months. Concerned enough to insist that I call the Hemetologist/Oncologist at U of M to get another opinion, and while I’m at it (she said in her most authoritarian way) get her opinion on the method and plan for the finish of the reconstruction (which is currently planned for late January.) She didn’t like the PS plan to just remove the lump….because after all, she thinks it is my rib. My rib grotesquely contorted out of shape. From the plastic surgery.

Finally got the PET scan this morning at Flower. The past week, the anxiety over having to wait for this test was, at times, enough to instigate little mini-anxiety moments. Not anxiety “atttacks”…..I feel that I possess a miniscule amount of self control to avert the suddenness of anxiety, but rather I would just find myself thinking about how many more days and hours I had until Tuesday morning.

I had to “fast” for twelve hours to prepare for the test, and this morning as I was getting ready, I was so hungry. But once the scan was complete, not really all that hungry. Hungry got bumped for scared. So there. I’m scared to receive the results. My next appointment with R. Onco isn’t until Sunday morning. Four and a half days from now for my imagination to run wild.

Falling asleep at the laptop….gotta give in to sleep when it comes. More later.

So I went to my GP today and finally had one small amount of good news. The venous doppler test I had last month to check the status of blood clots showed no clots. Good news is that I can go off of blood thinners, and just hope and believe that this medical malady is behind me. Still don’t now what “caused” that problem, but hopefully I am safe without these meds. I will do a different blood test in two weeks to see if there are any other possible clotting culprits lurking about in my system.

Other topics of discussion: No answer for the metal mouth taste I’ve carried around for more than 6 weeks now. Bleck, yeck, yuck, icky taste in the mouth. No answer.

No answer for the fatigue, except maybe stress. I think that’s the answer we came up with. I didn’t take notes on that part of our conversation and have had a billion intense thoughts since this morning, so that’s all I can remember about that.

Have some other random testing planned, and one big deal test.

Big damn deal test is the PET scan that we scheduled for next Tuesday before I left his office. I specifically asked, “Am I overreacting about this lump?” His response, “not given your history, no.” His recommendation, at the least, a PET scan, or go straight to biopsy. I didn’t know what to choose, but they were willing to schedule the PET scan immediately, so that’s what we did. Once I got to school, I called my surgeon’s office, and they asked to see the PET scan before scheduling time with her.

In a weird way, I feel better with yet another diagnostic test on this big hard lump on my rib. It’s just a gut feeling that I need more information. I’m amazed that I had to go to my GP to get the order. Thanks Dr. E.

So yesterday I had a regular checkup with Dr. Barone but of course had my surprise, the big hard lump/bump on my left chest to show him. I had expected him to kind of brush it off, but he instead gave me an order for a CT scan. Which I’m afraid to say, is exactly what I wanted.

I’m beginning to feel like a medical junkie. Like I can’t wait for the next “fix”, the next procedure………..just when I think I’m out of the woods for a weekly medical appointment, something new comes up (this time, literally.)

CT scan is scheduled for next week, November 5th. So for now, I have to place all the anxious thoughts about this lump in my chest that seems to change shape weekly and place them in a box out of the way of my conscious mind. Let’s see how much self control I can impose upon myself for yet another week.

WHY did I forget to take the Arimidex two days in a row? Realized that error last night. I’m thinking that is why I woke up two times in the middle of the night. Punishing myself for this huge error. (I’ll surely pay for the lack of sleep today…….)

Arimidex is the biggest weapon I have in my fight against reoccurance. Makes no sense I would forget it. Sixteen months post chemo, and I’m still missing important connections.

This is what is pissing me off the most. Then, as soon as that thought goes through my mind, I think of all the people I’ve met in the chemo and radiation waiting areas, at the cancer benefits etc. who are still in the middle of the big battles, and some of them have even lost the fight.

Last Friday I had a repeat ultrasound of my ovaries. Repeat, because three months ago there was a “blockage” in the area of the right ovary. Apparently, you couldn’t see a thing. My doc said since my CA125 test* results were so good, that we would wait to retest.

And on Friday….again, the technician couldn’t see the right ovary. Again, I had a transvaginal ultrasound. (For the record, this is my absolute least favorite test. I won’t even describe it. Yuck.)

I suppose my doc will see the records by Tuesday, which is not soon enough for me. I’m trying to not jump into the anxiety pool, but I fear I’m already there.

My hope is to find out it’s all for nothing….perhaps I’m just full of s*#^.

*

What is CA 125?

CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. It was first identified in the early 1980s, and the function of the CA 125 protein is not currently understood. CA stands for cancer antigen.

How is CA 125 measured?

CA 125 is usually measured from a blood sample. It can also be measured in fluid from the chest or abdominal cavity. The tests currently in use are all based upon the use of an antibody that is directed against the CA 125 protein (monoclonal antibody technique).

So this is the wrapper off of my Dark Chocolate Dove bar from last week. I thought it kind of funny, given that I have another medical issue to deal with for the forseeable future. Then last night, my left hand pinkie finger went numb. Then my hand and a bit up my arm. Lasted for more than 4 hours. Not exactly numb, but more like a “pins and needles” sensation. I’m at the point now, where my emotions are kind of crazy. I was pissed off, scared and disgusted all at once…..what is this? A Stroke? Problem with the Coumadin? One of the other drugs? Something from the surgery?? Sixteen months, and I am sick and tired of dealing with it all, and would like to just get on with life already. Today my NP from Primary Care Doc-Man called back and said, not life threatening, put an ice pack on it.

I have 14 days worth of “drain tube” records documents at my bedside. Filled my prescriptions for pain medications, an antibiotic, and post surgery vitamins. The days I have been waiting for are finally drawing near, and I am slightly unsettled, and getting anxious to be moving forward.

For the last couple of weeks in addition to being tired, everything also aches. These aches seem to come from deep within my bones. Side effect of Arimidex? maybe Zometa? I think both are possible and neither can be positively confirmed. Every day I compel my body to get up and move. I just put one foot in front of the other and then repeat. If I keep doing that eventually I’ll feel like moving. Some days that trick works and other days, well, I just keep putting one foot in front of the other.